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“A well informed patient is fiction …” he said

Earlier this week in one of the leading Dutch Medical Magazines Medisch Contact Dr. Broeren (Anesthesiologist) reflected on aninterview with me about Participatory Healthcare that was published in the same magazine two issues before. Headline was a statement by me, during this interview: “we act as if patients can’t do anything”.(or with Google translation just to get the quintessence). Unfortunately it is not possible to comment on the article it self without a log-inn, and I wanted to give room for further discussion so, I posted my reaction here in my own blog and encourage you to share your thoughts with us below.

In Broeren’s reflection titled “a well informed patient is fiction” (orGoogle translation of Broeren’s reflection) he sets great markers to some of the addressed issues in my interview. By some seen as criticism, by others as true, for me a great encouragement to give my perspective on the effort he’s taken to reflect on the interview with me.I took the liberty to condense some of them in my own words, but ask Dr Broeren to reach out to me if somehow I didn’t do his words justice.

Patients search and find information on the internet but that is basically adverse information. Given the fact that the (patients) also would tend to read easier formulated text than peer-reviewed information on evidence Based Medicine, they can not find the correct information.Here Broeren has a point, indeed a lot of information on the internet is barely readable nor understandable for many of the patients. But wouldn’t that be the challenge to meet for healthcare, to have a uniformed set of information on specific diseases, diagnostics, treatments. Maybe it makes sense to take a joined effort to NOT form this unified information source for healthcare institution by institution, but together nationwide? (or even worldwide?) Also i would like to stretch out that there is a huge group of people that can’t even read or write. In the Netherlands alone this counts 1 out of 9, and 2/3 of this are native Dutch. So : yes we there is a challenge we share.

Broeren states that there are indeed “googleing” patients. How true : 84% of the people visit Dr Google BEFORE they enter the consultation room, and a big chunk will do this after as well. Health information is the Number 3 of search content on Google. And yet, many healthcare organizations (including my own, up until recently) THINK their information is findable when they put PDF-leaflets online. Well: it isn’t. As healthcare we have a challenge here as well to not only make information findable, readable but also trustable. Some kind of authentication like the HON-code would be a good thing to apply?. We have to figure out the right way to handle not only the society change but also how to cope with Evidence Based Medicine Vs Internet Based Medicine, and how to get those two more together.They barely know what kind of medication they are on.Yes again a point there. However is the patient accountable for that, or are we as healthcare to take that as a challenge as well. For instance the reader that come with medication, ever tried to read this ? Do we take the time to explain it in a understandable way? Seen how the effort looks like to be given the wrong side : to make sure NObody actually reads these readers as a whole. Same goes for readability of peer reviewed articles etcetera, sure not intended to and aimed at patients, but keep in mind that once you get sick, the information about it gets a high-interest topic. Have a look on what is happening on sites likewww.mijnmedicijn.nlbut available in other countries as well, where patients give feedback on the use of medication, or the switch from branded to generic medications. I do greatly respect the effort Thomas Goetz (editor of Wired) took recently, to “translate” a medication reader into a readable format with the knowledge of a publisher and presented it at friends at TEDMED Best to let him do the talking about it 😉

Broeren expresses the hope TEDxMaastricht would be the starting-point of a discussion. Yes and no ! The discussion is already out there, it has been for some years , Not everywhere as intense and not everybody sees it. That’s why we i.e. set up our TEDx conference. Nobody (at least I didn’t) says that there are hundreds of thousands well informed patients out there. But this is rapidly changing. And Yes; it is a starting-point as well, if only looking to the reflection Broeren wrote and calls for action.

I kindly invite Broeren to our REshape PechaKucha Night (4 edition) we have announced the day after TEDxMaastricht “from idea’s worth spreading, to ideas worth doing”. 12 speakers will talk about what they have been doing with the ideas from TEDxMaastricht.

PS : during writing this blogpost got a phone-call from my brother in law. Two of his kids have a double allergy for both Eggs and Cow-milk. Because he cannot get acceptable information from his physician, and there is only little known about the combination of the two, he started setting up a website, and wants to make a app to share and to help a little…..

This is a very interesting concept and it is obvious that some doctors favor it more than others. Being a younger doctor or a more experienced one does not matter. I wanted to mention my opinion on 2 points. The first one has to do with"Information on the internet being basically adverse information. Given the fact that the (patients) also would tend to read easier formulated text" I agree that medical literature is sometimes more challenging, but challenging is not a synonym of quality. Thomas Goetz pointed this out in TEDMed and recently again in Futuremed. Someone else also mentioned about making medical literature READABLE. They even suggested a limited word count.If a patient is taught were to look for medical information, it no longer is adverse. Assuming that a patient is not able to digest certain medical terms because they did not go to medical school is huge mistake. It all has to do with a Patients intelligence, and I for one, without a doubt have Patients that are far more Intelligent than I am. If Einstein was my patient wouldn’t he be? How about Stephen Hawking? People with half their intelligence could probably understand Harrisons Medical book… At least I had to decipher arid, boring, medical books when I was a MedStudent.They barely know what kind of medication they are on???Once again.. Depends on the patient. memorizing medications is like memorizing a telephone number. Some can some cant. I am not pointing fingers on who has the blame but both partied could be guilty. Once again not the point. The point as Lucien mentions is how do we fix it. Simple… Work on your personality. At the end of a consult, challenge your patient with questions. Smiling. I may be young and naive to the experienced doctor, and yes I may be so but I KNOW I can make a patient like me, and when they like me they are more prone to remember and follow my recommendations.

I completely agree with Lucien’s reaction to Broeren’s article. Instead of looking at what is not working, both medical professionals and patients shoudl work together to make things work. Saying that patients get the wrong information from Google is admitting that medical professionals and organisations are failing in getting the right information out there, ranking high on Google. Presenting information in a way that patients of every intelligence/reading (or not reading) level are able to understand is the challenge. Working towards that will need new concept: Health 2.0, using less text and more images and video’s, using the experiences and knowledge of fellow patients, translating scientific information for a broader audience. Many of the speakers at TEDxMaastricht and other TED events like TEDMED talked about those challenges and are coming up with solutions, like Thomas Goetz. I agree with Lucien that Broeren should attend in 2012 and see for himself. I am sure he will be inspired like the 700 people were and still are that attended TEDxMaastricht 2011.@harrietmessing

I agree with only some of the points.- there are ill-informed and under-informed patients, many of which don’t know what medications they are on. Unfortunately, many elderly who may be more likely to have multiple chronic conditions and medications may be the least informed and least internet savvy. But their adult children may likely be savvy and access accurate info on the internet frequently.What is needed is education of patients and their family caregivers of how to search for and find accurate medical information. I believe that providers and hospitals have an obligation to provide this. The concept of an information prescription is a good one and providers should have a handout or info on their websites on how to search effectively and how to judge misinformation. They should also encourage patients to bring information they find with them to the appointment. I think there are many well informed patients also who can educate their physicians on current medical literature (no one physician can read it all) and clinical trials, for instance.The partnership between provider and patient on information gathering is key today and well demonstrated at TEDx Maastricht.

The first time I talked to one of my rehab therapists about a medical survey (on PTSS in SAH survivors) I brought in for her to read she was a little surprised. I could only read the summary, and wanted her professional opinion on this, for I thought it could be of value for my treatment.Talking about this, she agreed with me that my NEED, my drive to get better differed from her drive to find new information. Also, I have the time to search for hours on end on the internet to find information to help me in my process, where she is limited in her time. After finding information that I think is of value to me I need her professional review of it to see how it connects to my rehabilitation process.She welcomes my input, and together we filter out what is usable and what is not. In doing so I feel valued as a co-director of my own health, and sure that WE try everything that there is to make MY life better.

Patient cannot find correct information: Let us say patients go to Dr. Google and then go to their doctor. The issues that come up are multiple. 1. Doctor finds that the information is not good 2. Doctor is not sure of the information(especially the new updates) 3. Doctor doesnt like patients who question them basis those information. Now they have to use their options viz., 1. Re-direct the patient to information that he trusts or he has created and helps patients 2. Take the time to explain according to the needs of the patient. I believe patient education is the only way and Doctors should take help of para-medicals and also Pharma also to do this. Hospitals in general can device a system which can help the doctors who are attached to it do this better. Walking this extra mile is a must for the doctors if they are sincere and believe that a well-informed patient can help themselves and make the treatments work.True many a times patient do not know what medication they are on. Most of the times the doctor never explains. It is also true that the patient cannot understand many times but that should not be the reason not to explain. There are hundreds of well-informed patients. At least, as of today, they outnumber doctors who are pro-active in this patient education area.

Being myself a patient with a chronic disease I very much like this discussion. I had my first symptoms of PD when I was very young, about 13-14 years old. This is fortunately very unusual, but I am living proof that it is fact and not fiction.I would say that I am also an unusually well informed patient, so much in fact that my neurologist happily admits that I know more about current PD research than he does. Again fact and not fiction.However, I know that not all patients wants to be as well informed as this, they may not have the interest, ability or urge to know what might happen or which treatments are being researched. Also, life with a chronic disease is not a straight line, sometimes I feel in need of more support and reassuring from my doctor and other times I feel much more confident and in control of my life and my disease.In my opinion, the only way that healthcare can meet the increasing burden of disease that comes with a population that lives longer and longer is by involving the patients more. And not make the mistake of assuming that all patients want to be involved to an equal degree. I have seen a tool called "The Partner in Health-scale" (http://www.health.gov.au/internet/main/publishing.nsf/Content/E0247E69644D761ECA256FBE001C086E/$File/QuPIH.pdf) and also papers on it (http://www.publish.csiro.au/paper/PY03022.htm). Has anyone experience from using it in practise?

My parents are over the 80 years old. In the old times they listened and followed what the doctor, the teacher and the pastor says to do.Last ten years they changed. They asked questions and sometimes they have critics too.they are both suffering from a chronic disease and have to take many medicines. Now they are reading the reader very carefully. (and don’t take the medicine any more ;-)They won’t and can’t search on the internet, have no computer. But asked us, their children, for information.If they can change, well, I think everyone can. Time is over that patients only thrust one doctor. When I started my education as a nurse I was told to be the ‘patients lawyer’. Now I noticed that most of my patients don’t need a lawyer anymore. And now it seems funny anyway. A lawyer, to protect the patient against the treatment and ideas from the doctor!I’m happy that times are changing in this way. And it is already started long time ago! (I’m sorry for my English language is not correct, my education is a long time ago)

I’m glad to see that Lucien seems to agree with me on most subjects that I wrote about. Although my approach is different: I’m looking from the limitiations from the ‘now’, as he is not held back by current problems. Which is good, because that opens up roads for changes and improvements.Let me make one thing clear: I’m anything but against more involvement of the patient in his or hers own treatment. Problem is, that in my daily practice, patients rarely are involved, and if they are, they are for the wrong reasons. Like anxiety or false concepts. Although I’m, usually, willing to try and address these, practical limitations, mostly in time, make this utterly impossible.When visiting TEDxMaastricht, yes I attended, this was one of the main peeves that I had with regards to the talks, especially the talk from colleague Bloem. Conceptually, I totally agree with him: the physician should try to be a wise guide, not the God telling what is right or wrong. But me, as an anesthesiologist in a non-academic setting, am allowed about 10 minutes for a preoperative screening consult. And I need these 10 minutes not just for informing the patient, but also gathering my own. I would be thrilled to ‘challenge your patient with questions’ (@Christianassad), but where canI find the time?And that, to me, is the biggest flaw so far: conceptually absolutely undeniably desirable, but impossible in practice. Yet. The most important questions to me is therefore: how. How practically, how financially, how timewise.

Although it might seem that i am not held back by current system-problems, reality is different. Together with my colleagues my team and i are looking on daily basis for solutions that solves drawbacks as mentioned by Broeren. (btw i.e. on pre-ops field). Although we aar Radboud REshape & Innovation Centre are not intentionally grabbing at first to technical solutions, sometimes they come in handy. For instance to have some info gathered upfront, releasing some of the 10 minutes. Also sometimes process redesign can help to face the challenging doubling healthcare demand, frozen budgets and upcoming shortage on skilled personnel. Once again i cordially invite Broeren to come over and have some coffee with us, to see how we can cope with his and our most important questions together, by acting on it in stead of writing about it ;-)Lucien

If Broeren is so critical of what’s available to patients I’m wondering what he’s done to remedy the situation? In the States it’s the same issue: lots of complaints about what patients read with little attempt to create content.MDs have an ethical obligation to contribute in some way.I think these views support Harriet’s ideas above.

With the risk of splitting hairs: it’s not an ethical obligation, but (perhaps) a moral one. And moreover: legal one. But more importantly: apparently I’m not getting my point across. I’m not saying I’m not WILLING, I’m saying I’m not ABLE. And not (just) by my failure to perform my duties, but something that’s innate to both the system and patients.I do not want to reiterate the whole article, but the knowledge gap is too wide for a standard patient in a standard consultation. Moreover: patients hear what they want to hear, and understand what they want to understand. This has nothing to do with patients being dumb or what have you, but psychological processes. For everyone that’s not a MD (or is, perhaps even better), read: ‘vanavond om 8 uur’ by Anne Mei The. If you think it’s doctors’ obligation to push through all this, fine. But don’t count on that in the near future. TEDxMaastricht notwithstanding. I WAS there, and to be honest: not that inspired. The few doctors that spoke there, did give some ideas, but, understandably, not a way to implement a fix to all this. Creating content just means another folder or website. I can’t make people who don’t even remember past surgeries, read, let alone understand, my content. No matter how well written or brilliant. That’s my challenge..!

No splitted hairs on this side 😉 My question would be how could we close this knowledge gap for (a part of) our patient population, rather then trying to find a way for all of them. Sure, not every patient would like to given the choice of choose his own treatment, within given boundaries, but a (growing) amount of patients DO, and i expect this to be rapidly increasing. Thus given the fact (read the vast amount of patients requesting this, on the internet, social networks AND in our interviews) that there ARE patients that WANT and patients that DO NOT WANT to participate in the way we think at Radboud the future will be heading : how could both of us not either one but both ?By the way as ambassadeur of the Stichting Lezen & Schrijven voor de zorg (a foundation for decreasing literacy) i am aware of the fact that 1 out of 9 Dutchmen can not read nor write whereas 75% of them is originally Dutch, and that that give this discussion an extra dimension.

It seems a vital insight is missing here. Information is not only shared via the internet, but (illiterate) people can talk, can lookup telephone numbers, ask others to find information for them, etc. So we should not only look at who is looking/viewing/reading but also to who is talking. Channels interact, reinforce each other in complex ways that are impossible to decipher. So it seems to me that focussing on availability and social media is too simplistic.Let me illustrate that by an example. On April 21, 1997 my son was prematurely born in the Radboud. Unfortunately he suffered from a severe haemorrhage. The future was very uncertain, so what does a scientist do??? ? Well, search for info. So I looked in all the dungeons of the internet (1997) and discussed what I found with relatives, colleagues and other relations. Made some calls, even to Canada. Some other people I met also started looking and come back with information I would have never found or noticed. It became a sort of network of search, interpretation and conversation for a couple of days until an article emerged that seems to propose a possible approach. I can still remember that I surprised one the doctors by coming up with the article. He never heard of the research, took the article, read it and said a couple of days later that he would contact the authors. Later I heard he did and met them on a conference months after my son went home (he is done quite well, thank you).For me this proves that it is possible (but not a law) that non-experts can come up with valuable information for experts even though they cannot judge the value. And the do so by a mix of information sources, personal interaction and through various channels. We see it happen all around us, not only in the medical realm.

I agree with most of what has most of what has been said here …. and I echo Bryan’s brief comments… On my own site and blog I have gone to great efforts to make sure that the information is evidence based, easily presented and hopefully useful and actionable. Lucien is correct… despite my greatest efforts there will always exist a subset of patients who insist on receiving the same paternalistic style care that medical doctors have offered for centuries. I will also note, as I mentioned in my Birth of an epatient blog that many, many patients are just starting to realize that they can be empowered… that means that as they head online there must be meaningful, easy to read and interpret medical information that enables them further to make appropriate healthcare decisions — therein lies the obligation of medical professionals everywhere — to produce content that matters and can make a difference.

@ Harold : Thank you for your open feedback, good to see that our colleagues back then took the pro active approach in letting them being informed by a informed patient. Good to hear that he’s doing good right now. Would appreciate a cup of coffee one of these days to here more on what we could improve and how patients could help us even more.@howard please find Howards blog right here : http://www.howardluksmd.com/orthopedic-social-media/the-birth-of-an-e-patient/Thank you as well; we have to balance this over the next couple of years. Speed up where possible, slow down when needed.

I have SO much to say about this … Dr. ’s perspective is SO understandable, but there are so many facts and thoughts I want to explore. It’s simply out-of-date to say, as a blanket assertion, that patients cannot find good information on the internet. For one thing, "the internet" includes user forums, both web-style and listservs. I know from my own experience four years ago that THE BEST information online about treatments for my kidney cancer came from my patient community – not even from any journal, because this smart patient community has information faster than any journal does.I’ll break my thoughts into multiple comments, depending on how much time I have available:> Patients search and find information on the internet > but that is basically adverse informationIf “the internet” includes the vast bulk of web pages, then indeed many of them contain unreliable information. (In that case we’re talking not about the whole internet, but about web pages.)But does that justify a blanket assertion that the internet contains “basically adverse information”? Even if it does justify it, do we presume that googlers don’t know how to detect bad information? In 1999 I met my wife online, on match.com – but before I found her, I went through some sub-optimal search results! And I knew how to detect results that weren’t what I wanted, and keep looking.Don’t you do the same, when you’re searching for anything online? The only missing ingredient sometimes is ability to tell good from bad.And even if we decide patients don’t know how to assess medical information today, is the solution to tell people to stay offline, or is the solution to teach them? It’s like the old approach to teens and sex: it was sensationally ineffective to say “Don’t do that”:-)… a better policy is to teach people to be smarter and safer – to enable them, to train them. Indeed, it’s too late to tell people to stay offline; the Pew Internet and American Life project says that over 60% of US adults (3/4 of all those online) look for health information. > Patients … can not find the correct informationWith respect, I’ll point out that quite often DOCTORS cannot find the correct information. For my own disease, renal cell carcinoma, 3 out of 4 U.S. patients are never told about the only treatment that sometimes produces a cure (as it did for me). Why? For one thing, most US hospitals don’t offer it. For another, the information in respected databases is ten years out of date! Furthermore, I learned that from my patient community on ACOR.org. (My oncologist confirmed it.)We can’t even rely on well respected web sites to be up to date: the American Cancer Society and MedHelp.org, each with great credentials, has wrong information about the treatment, its risks, and/or its efficacy. Clearly, there is no single metric that guarantees “the correct information.” E-Patients know this, and constantly check and cross-check. Can doctors afford to do that, or should we let patients help?That’s the tagline of my talk at TEDx Maastricht, which was recently promoted onto the TED.com site. http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html Videos of other speeches, shorter and longer, are on my website, addressing different audiences, from US government policy groups to the National Quality Colloquium and the Institute for Healthcare Improvement. http://www.epatientdave.com/videos.

I hope Dr. Broeren can hear the signs of what’s happening. SOME patients are becoming e-patients: empowered (not passive), engaged (in their care), equipped and enabled, even educated about evidence. Not all are – because, as @Howard noted above, it’s only now beginning to seem POSSIBLE that patients can help. But indeed they can.Honestly, I was the last one to think I’d become an authority on any aspect of healthcare. And I’m certainly no authority on anything medical: I’m just a student of how the internet is changing healthcare. But I have spent my whole career in high tech, watching how industries change as essential resources become democratized. (For instance, I was in the typesetting industry, and it was totally revolutionized when fonts became present on everyone’s computer.)In healthcare few resources are more essential than information, and that’s what the internet has changed – forever. And there’s an essential difference here between the capacities of doctors and patients: the average primary physician has WAY more than 1,000 patients, with several thousand conditions; the average patient has only a few conditions.<a href="qik.com/video/42008627">Here’s a short video</a> (2:27) of an explanation I gave about this at a dinner meeting in Barcelona last week.If we want to bring the best information to every care transaction, what should we do? Apply pressure on doctors to read more journals and web discussions, or enlist patients to become more knowledgeable about their conditions? I suggest, the most productive approach is for the physician’s office to "download" more skill into the public’s hands.btw, Frank Booermeister’s Fifth Conference – he <a href="http://ww.thefifthconference.com/topic/health/patient-empowerment-activist">interviewed me</a>, too. Very interested in the subject.

So, here is an announcement:The final week of September, at Lucien’s "REshape Academy," I will deliver the first overseas showing of the new "e-Patient Boot Camp." Here is the web page with course outline and more details. (Today’s edition in Silicon Valley was cancelled due to problems with the venue. 😦 ….) Why a six hour course? Because after ~2 years speaking about this from every possible angle – patient empowerment, pharma marketing, government policy, end of life, quality and safety – the field has become so rich and so deep that I can’t fit it into one speech anymore. So this will be the deepest, most intensive discussion about these changes that’s ever happened anywhere. ________I’m about to board a flight to San Francisco – on Thursday I’m doing a keynote at Kaiser Permanente’s National Quality Conference. I’m honored that they invited me, and since I myself know nothing about medicine, I presume their invitation to speak to ALL their employees is because they see that what I’ve been saying here is real.

@ePatientDave: If you read the article that started this discussion, you will find that I actually used your case as an example. I saw your talk at TEDxMaastricht, and, who wouldn’t, was very impressed by your story. And I sincerely hope that all patients (eventually) would be behaving like that.But, as you stated yourself on TEDx: if you’re not satisfied with the results on page 1 of Google, you search on. And a LOT of my patients read what they want to read. More precisely: what fits their expectations or hopes. Even if the information is completely false. And this is quite counterproductive.As an example in my field of business: patients with a strong reason to undergo an operation with a spinal (e.g. big pulmonary problems) don’t want this, out of fear. So they look this up, and find mainly stories about paralysis after a spinal. Or they hear this at birthdday parties and the like. So it’s up to me to (try and) explain the risks of weaning difficulties post-anesthesia (very real and big), versus chance of paralysis (< 1 in 300.000).This is not something I am damning or denying: it’s here, it’s a reality, and probably will get more in the future. But it has some big drawbacks that usually are understressed. And these drawbacks are what I am trying to point out. Although, I’m aware of that, it’s not a very public-friendly position to be ‘defending’ (if I can call it that; I’m not proselytizing a physician=god doctrine. Quite the contrary!)I sincerely invite you to read the article (see the links above), even if it’s with Google translate. I’m interested in your reactions to these points.As a final thought: the headline was not thought up by me. It was made by the journalists to elicit a response. Which obivously succeeded…! 🙂

Here in Washington State we have another option.. Providers using online tools to educate their patients directly. For the 620,000 members of Group Health Cooperative doctors give patients online links o information that is relevant to their condition that has been vetted by doctors.GHC is unique in that they gave patients online access to all of their medical records and all lab results (even abnormals other then pathology) in almost real time. Over 60% of all patients are now using the patient portal and up to 30% of all doc patient encounters happen via email or set up telephone encounters. You can see a tour of it here http://www.ghc.org/cddemo/member/MyGHTour.jhtml Take a look at the after visits summary on the second page it shows advice from your doc as well as links to online resources.